Why am I here?
There are at least half a dozen times in my life I should’ve been either dead or paralyzed. I’m not either one, which means there has to be a reason I’m still standing.
After a lot of contemplation, I realized that if God wanted me to go back to work full-time, He would work a miracle to get me there. Instead, I’ve recuperated just far enough to write letters to elected officials and educational blog posts, and once in a great while make a personal appearance at a CFS/fibro PR event. That seems to be what He wants me to do, because once I made the decision to devote time to activism, things started to fall into place. If I wasn’t supposed to be doing it, it wouldn’t have come together that easily.
I know that everything you write online is archived somewhere and will be available permanently, therefore, I had to be positive that I was not jeopardizing my ability to get hired somewhere before I started writing about CFS in ways that were google-able under my name. Once a doctor opined that I’d never return to full-time work, there was no such risk – I make significantly more per hour working from home as a proofreader than I would with a part-time office job, so I’m not likely to be applying for a part-time office job where they’d be googling me to get the dirt I don’t want to tell them. (Potential proofreading clients get enough background information off my website that they don’t usually google me further – it’s not like they’re offering me an on-site job where I’ll be a representative of the company to the world, what I do is strictly behind-the-scenes and no one is aware that I am doing it other than the client herself; my name isn’t put on the finished product.)
I basically have nothing to lose at this point by speaking out.
There is, potentially, something to gain: someone may offer me a paid writing or blogging job – with a million CFS patients in the US alone, probably 20 million worldwide, that’s a big market for the information. Not just the patients, but their friends/relatives/employers who might believe from me what they won’t believe from the patient. I’ve had people who didn’t believe me when I said it, but then saw or heard something about CFS elsewhere that corroborated what I’d told them, and concluded that it couldn’t be a figment of my imagination if someone I don’t know described the same thing. Hopefully, some of my readers will point people to my blog to back up what they’re saying, and I can lend them some credibility.
One thing is certain, I’m still here because I’m here to help.